AnonymousSeptember 18, 2007 at 1:55 pm
I am post GBS since May 2005. I had a bone density scan done 1 year before onset that was normal. The doctor recently ordered another when I went in complaining about muscle cramping and spasms and now have a T-score of -2.5 which indicates I now have osteoporosis. My vitamin D levels were also on the low side. The doctor wants me to begin taking Fosomax along with extra calcium and D nutrients.
I spoke with my cousin last night who is a pharmacist and we were wondering if GBS might be a contributing factor of such a rapid decline in my bone density or possibly the IGIV infusions displaying a side effect.
Has anyone else had this kind of problem appear? Does anyone know of any studies done in relation to this happening?
Would love to hear from anyone on this topic.
AnonymousSeptember 18, 2007 at 3:07 pm
Robin, I too am post GBS – May 2005. I also had perfect bone density before GBS, and now, although not as severe as yours, I have osteoporosis, I was completely paralyzed for 7 months; in the hospital for 10 months. I attributed the loose of bone density to not being able to bear weight for 1 1/2 yrs. I had IVIG and Plasmapherises (both 2 rounds). Now I take 1800 calcium daily and injectable Bonvia (lasts 3 months).
This year I have fallen quite a bit and have broken both feet (left foot 3 times) and currently I’m recovering from a broken leg. I tell you this to stress the importance of using whatever adaptive equipment will keep you safe. I wear AFO’s and use a walker and wheelchair.
A bit of encouraging news – xrays of my feet/ankles show bone important! Take your calcium and do as much exercise/walking as possible!
AnonymousSeptember 19, 2007 at 1:09 pm
I have osteopenia/osteoporosis from almost 4 years of Prednisone use. My Dr. has me on Fosamax and I also take a calcium supplement w/ vitamin D and also prescription Calcitrol. Things have improved a great deal for me. Speak with your Dr. and see about possibly adding the supplements and also to see if calcitrol would be beneficial.
AnonymousSeptember 19, 2007 at 6:02 pm
When I took Nate to get fitted for his AFO, his ortho took x rays of his legs and hips.
He told us that Nate’s bones look what he called “washed out”.
He says that means the bones are not looking normal anymore.
He didn’t say Osteoporosis per say though.
He said that after Nate was walking more, he hopes the bones would get better.
AnonymousSeptember 20, 2007 at 12:58 am
I think osteo health is linked to auto immune diseases. I had a bd scan in early May 05, it showed I have bad hip bones-density wise-a 14 on the scale-not good:( . I have broken my fib in May 05, didn’t know until june/july, and I might have one now-same kind of bone pain. I had a bridge fracture of my pubus rami(pelvis) from falling in Feb 05, at the same time I broke the snuff box on my left hand, and I have broken my feet and more toes then I can remember. My Mom has osteopenia, but hasn’t had any problems or fractures-but she does have another type of auto immune disease. I have a history of several auto immune diseases also. In my opinion, since others who have auto immune diseases have osteo health problems it doesn’t seem to be caused by GBS/CIDP, I think its just another auto immune disease rearing its ugly head at a time when our immune system is having a problem. I can’t blame my bone issues on gbs/cidp because I had the problems prior to my first paralysis event.
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